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| Lots of Yellows this Fall |
Last Wednesday, I published my letter from a 2012 appointment with Dr. ANS, detailing what my life was like on a day to day basis.
I said I would follow up that letter with the most recent letter from my October 27, 2014 visit with him, which demonstrates the fairly dramatic changes in my life and functioning since that 2012 visit--and really since I got sick.
I couldn't write a better description of the changes and the day-to-day functioning I have now. Again, these letters from Dr. ANS are very personal and revealing, but as I said in my previous post, I feel it is worth sharing.
So, here it is. :)
Blessings,
Emily
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| Lots of Leaves for Mom to Rake! |
October 27, 2014
Emily is a 39 year old who returns in follow-up of her POTS, CFS, and related conditions. I last saw her on February 28, 2012, but the visit was informal. She has been doing much better in the interim. The main changes in the regimen were to add low-dose naltrexone, now at 3 mg nightly, for pain. This has provide a moderate improvement, and when she has stopped it pain has resurfaced.
Higher doses led to increased GI symptoms. The second main change was to try IM vitamin B12, now at 1000 mcg IM twice weekly, which has helped improve her energy substantially. In 2012, she was unable to be upright long enough to engage in any activity without aggravating autonomic symptoms. She could only eat one meal upright, the rest had to be while she was in a recliner. She could walk 20 yards daily, using a wheelchair for longer trips. She could manage one small errand mid-afternoon, and reading for even a brief period increased fatigue. Now, however, she can sit up and eat all meals at the dining room table. She still sits with legs crossed under her. She spends much less time in the recliner, perhaps 30 minutes in the afternoon. She estimates that she can be up most of the afternoon, can be out of the house for appointments and still be able to do a second errand or social events that day. She can do consecutive days of activity. The same actives are not as taxing, and she is more alert. Her social life has expanded, and she has been on some dates. She has been able to go out for meals, and is able to sit up for these, unlike before. She uses the wheelchair much less frequently, mainly when she has to stand. Her blogging efforts are daily rather than weekly. She has been able to care for two puppies. [Okay, so this is a bit of a stretch! Mom does this job!] Her stamina is gradually improving. She is not driving, and travel is taxing. She still gets post-exertional worsening of her fatigue. She needs a nap from 5-6:30 PM. She is in bed from 2 AM to 12 Noon. She is in bed at 10 PM, but watches TV, blogs and does audio-books. Her cognitive abilities have improved as well. She planned her 20th high school reunion and managed to attend, although paid with increased symptoms afterwards.
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| Mom Had to Do a LOT of Raking FAST! |
She began Mestinon for GI motility in the fall of 2013, and has increased the dose to the current 156 mg daily. This has been an important part of the improvement that began with the B12 injections, although hard to separate the independent effect of each. Mestinon has helped GI motility somewhat, but has had a larger effect on autonomic function. The first dose of the day often causes cramping and stool urgency. Dr. GI is starting her on Linzess next, using a slow progression upwards.
She is tolerating manual physical therapy, working with Ryan, DPT, once weekly. She is gradually able to tolerate a bit more neck movement and manipulation, but her neck remains overly sensitive to manipulation.
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| Fall Colors |
Her main symptoms at present are fatigue, intolerance of standing (which provokes sweating and tachycardia), neck discomfort, difficulty with arms overhead. Urinary frequency is much improved compared to 2 years ago. She remains on a gluten-free diet, and has a reduced intake of milk protein. She follows the FODMAPS diet. She has one liquid meal daily, mostly fruit and almond milk, kefir, and gelatin. Evenings are hard for her, but she is able to be on the phone each evening. Facial flushing occurs several days each week.
On examination, Emily was brighter and more alert than I have seen her before. She was able to tolerate a 90 minute interview while remaining seated.
Seated slump testing had a normal ROM, but caused some facial flushing. Ankle dorsiflexion is only 90 degrees on the left, 95 on the right. Straight leg raise was 40 degrees on the right, 45 degrees on the left before the onset of stretch. Upper limb tension testing on the right lacks the 30 degrees of arm extension, and 20 degrees on the left. Her trapezius muscles are tight and slightly tender.
IMPRESSION: Emily is doing progressively better on the current regimen, with a major impact from the naltrexone, vitamin B12, Mestinon and physical therapy. I think she will continue to improve as she gains more stamina, but our plan will be to increase the Mestinon dose towards 180 mg daily once she has evaluated for Linzess. Next, to help with the daily facial flushing, intolerance of a variety of foods, and the possible contribution from mast cell activation disorder, I think it would be reasonable to try Cromolyn (gastrocrom) to see if this helps at all. She had a low tryptase level (drawn last week, less than 1), but my suggestion would be to try the Cromolyn regardless of the serum level. Other options include a trial of Droxidopa for the orthostatic intolerance. I can see her back on an as-needed basis.
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